Tag: Chronic illness

Never-Ending Hope

This unpublished post from 2019 is a snapshot of one of our darkest nights. Reading it now, I can see it was also the beginning of a journey that would forever change our lives and teach me that hope is not simply a feeling, but a decision.

This post was never published when it was originally written on October 26, 2019. Reading it again, it feels as though it happened a lifetime ago and yet, paradoxically, only yesterday. Little did I know then that we had found the physician who would become the first to help my daughter receive a proper diagnosis and treatment, allowing her several precious years of relief.

As I begin to write this blog it is only 7 pm and my daughter has already fallen asleep. She is exhausted; physically and mentally. In stark contrast to my daughter, my exhaustion is displayed in my inability to sleep and so my rant begins.

We found a new doctor to help her. He is an infectious disease specialist and a few hours’ drive away. He comes highly recommended and specializes in complex patients who have fallen through the cracks of the medical system.

Our first visit last week made us very hopeful and resulted in a multitude of tests, an impromptu visit ordered by him to the neurologist (resulting in more tests) and an intensely long drive home in the middle of the night in a nor’easter, which I was not expecting.

As the large raindrops pelted against my windshield and the wind gusts pushed my car around the highway like a bully with something to prove, my beautiful daughter fell asleep beside me in the passenger seat, curled up in the fetal position. I stole glances at her as often as I could safely pull my tired eyes from the flooded highway. I couldn’t remember the last time I had seen her perfectly still. I have not seen her not tic nor not move her body involuntarily in over a year. She moves so much these days she is in constant pain. Her tics prevent her from walking normally now. From leaning back and tensing, she has hurt her back and pulled the muscles in her neck. She is unable to attend a regular full day of high school because she can not walk forward normally any longer.

On her first visit, my daughter’s new doctor took her off of azithromycin and prescribed her cefdinir. She had taken Omnicef multiple times as an infant due to chronic ear infections and never had a problem with her stomach, from what I remembered. He stressed if she had any changes in her bowel movements to take her off of it immediately and call him. Well, that unfortunately was the case and he called me right back. His orders were to take her off antibiotics and come see him again over the weekend since her tics were becoming much more severe.

As we waited for the doctor visit, her tics are full body and constant. She is in pain. Her intrusive thoughts began again with a vengeance a few days ago. She tried to take a hot bath tonight to help relax her muscles and her mind, but she came into my bedroom tonight, wrapped in a towel, leaving a trail of water behind her, sobbing. Between sobs I can make out little of what she’s saying, but understand fully as we have been here before. “…I’m turning into her…” “…won’t leave me alone…” “… my mind is broken…”

My heart is broken for my daughter. I hold her in my arms and rock her as I did when she was a young child. I tell her she is safe and that I will never let anything hurt her, but the truth is that that is not entirely true. There is not much more I can do to help her. She is terrified as am I and we need help.

She is trapped in her own mind and trapped in her own body and both are betraying her. Neither of the two are working with her nor bring her happiness. She cannot walk, run, read, sit still, concentrate, have happy thoughts. She feels constant pain, shame, embarrassment, fear, anger, and hopelessness.

Well, I will be her hope. I will be her rock. I will love her like it’s my job…. because it is. I will never stop, never quit looking for answers. I will not take no for an answer. I will see this through until we find HER cure.

As I rocked my daughter in my arms that night, I made a promise to spend the rest of my life searching for answers if that’s what it took. She will never be alone in this fight and I will protect her with the fierceness of a mother bear protecting her cub.

The Beginning, Again

A reflective telling of the beginning of my family’s long journey through chronic illness, uncertainty, and unwavering love.

And here we go again.

I sat and stared at the blank page wondering to myself “Where do I begin…. again?” Do I start at present time with the latest ambulance rides and hospital stays or do I go back in time to symptom onset?

Common sense tells me the best place to start is always the beginning.

It was my daughter’s summer vacation between first and second grade. She had an energy and vibrancy that was hard to keep up with and could light up any room. She had more friends than she knew how to fit into a summer calendar. None of whom she knows any longer. Strange symptoms make estranged friends.

We had some time off and decided to pack up the car and head to Ocean City, Maryland. All we wanted was family time, ocean waves, and memories. Well, we certainly got the memories.

One rainy afternoon, while driving away from the beach, a sudden and rapid movement caught my eye from the backseat. “Something is wrong Momma”, my son said. I looked back and saw my daughter, buckled safely into her car seat violently whipping her head. I reached to her and she grabbed my hand as we made eye contact. All I could see was the fear in her eyes. I found myself speechless and all this sweet baby could muster was “I can’t stop.”

We immediately pulled over and I grabbed my little angel out of her car seat and I held her tightly to me. She wrapped her little arms and legs around me like a scared baby koala and as we stood on side of the road in the rain, I could feel her warm little breath on my neck start to relax. I could feel her soften in my arms and could feel her heartbeat slow. She settled down while we stood there and I started to think maybe what I thought I saw wasn’t what I saw. Any mother knows what I am talking about; that chronic second guessing we do to ourselves. Until we know better.

Sitting here writing this, remembering that moment that changed our lives almost two decades ago has made me break out into that familiar cold sweat that I have experienced hundreds of times over the years since then. That sick feeling in the pit of my stomach and the wave of chills that reaches my soul. The tears that fill my eyes uncontrollably. It is a fear of the unknown. A fear of lack of control. It is a fear of sickness and disease in my child. It is navigating a storm without a compass. It is eventually learning this will be a lifelong battle of searching and advocating and asking for things that the medical community denies exists and I will stand beside my daughter and wield a sword until my dying breath.

She never deserved this. We never deserved this. Yet here we are. Still fighting the fight. Again and again.

Never Ending Journey

A personal story of Borrelia miyamotoi, symptom relapse, and the many challenges faced by patients and families living with tick-borne disease.

The frustration of Borrelia miyamotoi. Round and round we go. We thought things were going great, and on the outside they were. We had no idea what was happening on the inside. After years of what appeared to be remission from life-altering Borrelia miyamotoi, we are once again dealing with severe symptoms. The original blog was stopped because, hanging onto anything that helped, I didn’t want to jinx us. She was doing great! Why tempt fate? The journey had seemed to end. How naive of me.

Before I go any further, allow me to clarify. My daughter, now 23, is in the throes once again of multiple ambulances, emergency rooms, hospital admissions, and every specialist under the sun. Once again, the majority of specialists attribute her symptoms to anxiety. As a parent, when asked, trying to explain to these doctors that there is obviously a component of anxiety in this, though it is a normal level for what my daughter is experiencing, they grab onto that statement as if their lives depend on it and type it out in her visit summary and send her on her way. Trying to explain that she feels as if her body and mind are out of control and never knows when/if another convulsive episode will occur which is triggering her anxiety falls on deaf ears repeatedly. Why is this so difficult for the medical community to comprehend?

The frustration felt by both parent and patient is real. As I sat in the hospital trying to explain the difference between Borrelia miyamotoi and Borrelia burgdorferi for the umpteenth time (because the wrong test was run) to the umpteenth physician I can feel my annoyance teetering on rage. I have gone there and have told some doctors “Go do some research,” and “I’m not here to teach YOU,” but upon thinking about that, maybe I am. Maybe I am just that person to teach. Maybe sharing this desperate journey will teach someone what to look for, even if it’s only one specialist or doctor. I’m just tired. I’m beaten down. I’m an empty skin suit of a desperate parent trying to get through another doctor visit on nothing but hope.

So, once again, this is my blog. New and improved. I will be posting the old blog posts to show the past symptoms and struggles and visits and labs and tests and sleepless nights. I am hoping this touches someone enough to want to understand the differences between all of these tick-borne coinfections and what they do to a human being and the people that love them.

This is a story of undying love and devotion. This is a story about a search for support and answers. This is my story.